My Journey
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It has not been an easy journey toward acceptance. For a very long time I was in denial of my limitations. Then, when I had no choice left but to admit to them I faught to remain "normal".
Among my many problems are Firbromyaliga, Multiple Sclerosis, recurring shingles and a vestibular disorder....to name a few...LOL. This page is very difficult for me to write. I hate being "disabled"....but, learning to live with it is part of the journey.
I suffer from all of the FM symptoms. As well as those of a vestibular disorder....which means very simply that my sense of balance in my inner ears has been effected and I fall frequently. It has also effected my ability to hear. I have no idea how much of my hearing I will eventually lose...but, I can tell that I am slowly losing it and a hearing aid will not help. In addition I have recurring episodes of shingles which effects the left side of my face....especially the nerves which lead to my eye and ear. Whenever I have a shingles episode my vestibular disorder kicks in and my sense of balance is lost inspite of the medication I take for it. I also have arthritis in various parts of my spinal chord. Unfortunatley I have a hereditary bleeding disorder which means I am unable to take any type of nonsteroid anti-inflamatory drug for the arthritis.
Prior to having FM I lead a very normal life and enjoyed exercising daily. However, with each flare-up I grew weaker and could no longer do many of the things I had done in the past. I tired so easily and walking became very difficult at times. My husband would often try to convince me to rent a wheelchair when we went to functions that required a great deal of walking. But, I stubbornly refused. I often told him that as long as I could take even one step I would WALK!!! I used a cane for several years and it did help.
Soon, I found that I had become isolated from the world. I was no longer able to work or make appointments to see friends because I never knew when I would have a flare-up. Even the outings with my husband became difficult because I could not walk for very long. Finally, I had to admit it...I needed a wheelchair at times. My image of myself as a strong, independent woman changed. Suddenly, I was "physically challenged" and required not only a wheelchair but, also a placard for my car. I wish I had a camera with me to take a picture of all those people who look at me in shock when I park in a "handicapped only" space but am able to walk into a store to buy a few items. That's the strangest part of having FM and Multiple Sclerosis...I look so normal no one can tell how weak my body actually is.
Well, it turned into a vicious cycle. I would have a shingles episode which lead to an FM flare-up or a M.S. exacerbation as well as the arthritis in my spine acting up and before I knew it I was no longer able to propell my wheelchair on my own. After I had finally realized that at times I needed one but still had the upper body strength to get where I wanted to go I was once again dependent on someone else to wheel me around. There went my self-esteem again. I had to go through the entire emotional acceptance of who I am. I am a physically challenged individual who can walk for short distances at a time but otherwise must rely on someone else to get me where I want to go. But, this does not define me as a person. I am a warm, loving, caring individual who is intelligent and at times witty. I thrive on social occasions because I am a people-person and I love to sit and talk with others. I am still the person I was before...it's just that my arms and legs do not work as well as they once did.
I am able to stand and walk for short periods of time. However, I am finding that I am falling more frequently....sometimes several times a day. I've discovered a special type of walker that is much smaller than regular walkers, has four wheels, brakes and a seat. It also folds and is easily stored in my car. With my new walker....called a rollator....I am able to go out for short periods of time on my own. It doesn't give me total independence but, it does allow me to function on my own.
Someday I will have an electric scooter and I will once again be able to take my dogs for a walk....or just go out to the mall on my own for hours and window shop.....I will once again be able to attend meetings and conferences on subjects which interest me. But, for now, I will have to be content with what I can do because electric scooters are very expensive, my medical insurance will not cover it, and I still have the ability to walk. However, I am no longer isolated because I have discovered the internet and have made many friends here in cyberspace. Although I found the physical act of writing difficult I was able to type without too much difficulty for several years. Now, typing has become difficult and I am trying to find a program for my computer which will allow me to speak instead of type.
I was also born with a birth defect I have very little knowledge of. My
mother has not been helpful.....she refuses to discuss it and claims she cannot even the name of the birth defect. She did tell me that
it is hereditary, that one of my cousins also had it, and that I required
surgery as a child to correct it. I spent one month in the hospital and required
a blood transfusion after the surgery......probably due to an hereditary
bleeding disorder that I have. All she will tell me is that the defect
was in my digestive system.
There is another part of my journey that I would like to tell you about. It is very difficult for me to discuss this but I feel it is the only way to stop child abuse. It only takes one generation to stop abuse....I have chosen never to abuse my children or anyone else. My father was physically, emotionally and sexually abusive. My mother was verbally abusive. She did nothing to stop my father from abusing me.
I'm
obsessive/compulsive....probably due to the abuse I endured as a child. Unfortuanetly, those who have been abused as children often become self-injurers. Other signs of child abuse are obsessive/compulsive behavior, depression,MPD....Multiple Personality Disorder...., suicide and even flashbacks. I am all too familiar with these symptoms. The flashbacks come out of nowhere....I have no idea what triggers them. Those who experience flashbacks are living through Hell again...it's as if it is happening to us again. It is one more thing which I must accept and live with. But, I will never again allow what happened to me as a child bring me so far down emotionally that I will try to end my life. If I were to die then those who abused me would win. I refuse to give them that satisfaction.
For some strange
reason I feel that if everything is in it's place then I am safe. I try not to
force my neatness on others......they don't have the problem ...I do!!!!!!!
Also, due to many of my medications I itch constantly. Sometimes I can handle it
and other times I can't. When the itching becomes too intense I begin to
scratch. Since I have a bleeding disorder I bruise very easily and at times my
arms and legs are covered with bruises......some from falling down and others
from scratching. I know that scratching is not really helpful...but I can't take
any more meds than I am already on.......and there are times when scratching is
the only way I can releive the horrible pain of itching. Yes, intense itching
can cause pain. Unfortunately, I have on ocassion scratched my body to the point
that it has actually bled. I am constantly questioning myself and trying to be
as honest as possible. Am I a self-injurer????? I have faced the fact that it is
a strong possibity and I now go to great lengths to protect myself from myself. To do anything which would cause me to bleed knowing that I have a bleeding disorder is a sign of a self-injurer. When I
feel the need to scratch I immediately do something else to take my mind off of
what I feel compelled to do....scratch until I bleed. So far it has been
successful and I have not injured myself for several years.....at least not
while awake. Unforunately there have been times while sleeping that I scatch
myself and bleed. I try to control this by keeping my nails very short so that I
can do very little damage.
I have also suffered from panic attacks most of my adult life. At first, when I realized what was happening, I went to a psychologist who taught me a few coping methods. Several years later I saw another shrinky-dink to learn more coping methods in order to control my panic attacks. Finally, when I realized that psychologists did not have all the answers I went to my primary care physician. I asked her for desensitization therapy because I had learned that some of my attacks were triggered by medical situations. She had heard of this type of therapy but had no idea where to begin. Luckily for me, as a former teacher, I knew just what I needed. I actually wrote a lesson plan for myself....to teach the nurses how to desensitize me. It was a very difficult period for me but, they helped me immensely and supported me in anything I asked them to teach me. It was through their kindness and understanding that I learned to control my fear of needles, blood, IV tubes and anything else related to the medical profession. After my desensitization therapy course I was able to volunteer at a rehab hospital for patients who had suffered head and spinal cord injuries. However, I do continue to have panic attacks occasionally, falshbacks frequently, live with OCD constantly and must always be carefeul not to injure myself.
This site has given me to opportunity to
inform the world of fibromyalgia, multiple sclerosis and other invisible disabilities and how an invisible disability can effect one.
This homepage has also allowed me to discuss child abuse and its lingering
effects. I am also able to list many of my favorite causes and join with others
through webrings to make this world a better place for all of us.
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There are so many steps we go through On our journey toward healing There's denial, grief and anger There's resentment and lack of feeling We may even feel depersonalized We don't care what happens to us now No one asked us before The why, if or how So we try to join together And somehow work it through But first we must BREAK THE SILENCE If we are to begin our lives anew Each of us has a story Our stories must be told Our abusers must be named Our stories must unfold © shaynamaydle published in Mystical Night |
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You cut me And the wound festered It invaded my soul The time has come to cleanse it This is what I must strive for...... |
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UPDATED: August, 2000......Well, I recently entered another path on my bumpy journey toward acceptance. During a monthly self exam I found a lump on my left breast. I waited two very long weeks to see the surgeon my doctor recommended.....and then another week waiting for the results of the biopsy. I am very fortunate....it was benign. Everyone should do a monthy exam...not just women but also men...it is the most likely way of discovering a lump in its early stages. If you do not know how to do the exam ask your doctor or contact the local Cancer Society in your area for information and a booklet.
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We feel that I had some type of neuromusculor disorder as a child. I was in a special class for children who were considered to be in "fragile" health. I remember that a few of them had heart problems and one boy had severe asthma. The others had mild cases of polio. My mother would not discuss this with me when I was younger and today she simply says that she does not remember why the doctor placed me in this class. One could not be admitted to the class without a doctor's request. We rested most of the day and when we did not rest we did our classwork. This was for grades 1 through 6. The classroom was the size of a gymnasium and everyday after lunch we took a nap....we all had our own cots that were spaced against the walls of the classroom.
Several years ago I contacted the Special Education Supervisor for the school district I attended as a child. She was very helpful and dug through all the old records until she found mine. She confirmed that I was indeed in this class, that it was for children in "fragile" health, but could not tell me why I was there.....all other records had been disposed of years ago....however, she did tell me that my memory was correct and many of the children placed in this class had recovered from mild cases of polio. My sister has been wonderful in attempting to find my medical records. Several years ago she even ran into one of our pediatricians at a party and questioned him. Unfortunately, he was unable to remember me and had no idea what had become of all the medical records because he had retired many years prior to this.
Although, like MS, I have the symptoms of post polio syndrome there is no way for me to learn if I ever had polio as a child. My neurologist has suggested that I just "let go" of this because there is no way for me to find out any more information. My life and childhood continue to be a strange puzzle that I am attempting to put together but will probably never finish.
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UPDATED: January, 2001......I have been taken off one of my medications that produced extreme itching. There are times when I am under a great deal of stress that I have an urge to begin scratching. I am able to resist the urge but have now begun to face the fact that I am indeed a self-injurer. Or, perhaps my husband is correct....I was a self-injurer but I am no longer one because I can control it!!!!!!!!! I feel this is another victory and another step toward healing.
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April, 2001....My arms are growing weaker and it is more difficult for me to lift anything as heavy as a mug. We went out for dinner and I ordered hot chocolate afterward...but found it extremely painful to lift the mug to my lips. We gave away all of our dinnerware 2 years ago when I realized that the stoneware was too heavy for me to lift so I could no longer set the table or empty the dishwasher. Since then we have been using a Corell set that my sister no longer wanted...I don't know why because it's beautiful....but, it has helped me immensely....so it came as a bit of a shock when I couldn't raise the mug to my lips and drink all of the hot chocolate. At home instead of drinking from regular mugs I have found that light weight traveler's mugs are the easiest for me to use. Not only do they have a lid which helps prevent spills but they also hold both hot or cold beverages.
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UPDATED: December, 2001......I thought I could control my urge to scratch but, I have found that I was wrong. I am still trying not to hurt myself but there are times when I scratch until I bleed. However, I am able to control this problem better than I did in the past.....so I feel I am making progress and perhaps being a self-injurer will be behind me one day.
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UPDATED: April, 2002......As unbelievable as it
seems to me I am able to paint with watercolors. Although I have difficulty
writing and holding a pen it is completely different with painting. I simply
hold the brushes loosely in my hand and let the water and colors flow. This has
become a tremendous experience for me. I find painting very relaxing. I'm not
the best painter but I love painting.....especially landscapes and flowers. I've
discovered a new world.....and once again proved to myself that being disabled
does not mean the end to new experiences.
As far as the scratching goes
I'm afraid I continue to scratch. However, I no longer scratch until I bleed. I
have caused bruising on several occasions but I feel I am making progress.
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UPDATED: September, 2002 I have had shingles twice since my last update. Once was in June and the other began at the end of July and continued into August. I have joined a Neurological Disorders Support Group....due to the recurring shingles and MS. The last shingles episode has left me very weak and I am having more difficulty "getting around". By joining the support group I hope to be able to increase my knowledge of neurological disorders and how to cope with them. Also, if another type of medication is available for MS which can be taken with recurring shingles I will know what it is and be able to discuss it with my neurologist. I'm considering going back to California to see my neurologist and talk to her about how weak my body is becoming. I do not wish to see a "new" neurologist where I am presently living. I have no desire to go through all of the tests again and try to bring a new doctor up to date on everything I have been through. My neurologist in California has been treating me for almost 15 years and I trust her to keep me informed.
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UPDATED: October 12, 2002......I've spent the week in bed due to a horrible flare-up. My Primary Care Physician has scheduled an ultrasound of my carotid arteries to see if I may have had a mini-stroke. My former neurologist has suggested that I find a neurologist closer to where I now live and go through all the tests for MS again to see if there has been any change. The only way I have been able to leave the house has been in a wheel chair. As the week progressed many of my symptoms disappeared...but, my arms and legs are still very weak.
I have seen a neurologist and have begun the testing process again. We should have more answers by the beginning of December.
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UPDATED: November 7, 2002......I have had shingles again. It seems to me that I am caught in a vicious cycle....shingles leads to an m.s. flare-up which leads to shingles again.
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UPDATED: December, 2002......There does not appear to be any change. My neurologist agrees that anything....even a slight cold....can cause a flare-up (or an exacerbation as she calls it). This flare-up has lasted longer than any other flare-up I have had in the past. I am basically housebound and only get out to see my family or occasionally to have dinner with friends. It can be very embarrassing when I am unable to follow a conversation, need to have things explained to me several times or cannot think of a word when I am in the middle of speaking. The physical aspects of m.s. are hard enough to deal with ........the cognitive ones can be devastating.
My neurologist feels that my only hope of breaking the cycle is 3-5 treatments of intravenous cortisone. A nurse would come to my home and stay with me for an hour while administering 1000 mg. of cortisone. Before we try this she would like to confer with my endroconologist to be certain it is safe for me. I only have one adrenal gland and it has to compensate for the adrenal I lost due to a tumor 15 years ago. She may also want me to see an infectious disease specialist before beginning a low dosage of a new medication to try and prevent any further outbreaks of shingles.
I called my mother to inform her that my sister had become a grandmother. Her reaction was typical.....she informed me that she is not interested in what is happening to any of us. She then told me to never bother her again and hung up the phone. It did shock me somewhat...but, I have never considered her my "real" mother. She is my birth mother. The woman who gave me unconditional love and acceptance was a friend of my parents'. Her name was Cecil and I named my daughter after her. My parents always told me how ugly I was....I was too small and too thin. But, Cecil always told me I was pretty and she called me her "shayna maydle". In Yiddish the word shayna means pretty. I have taken that not only as my internet name but, also the name I prefer.
So, apparently all contact with my "birth" mother has been terminated. I knew it would happen one day and I can't say that it will be difficult for me to not have contact with her. Actually, it may be best for me. When I contacted her in June, 1986 and confronted her with what my father had done to me she told me it was my own fault. If I had not been so afraid of him he would never have been able to touch me. She also told me that she was so careful not to leave the "other two" alone with him but, it never occurred to her to never leave me alone with him.
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UPDATED: March 21, 2003......I decided to take the treatment in December. It was a very difficult 17 days but, well worth it. The first 5 days consisted of receiving 1000 mg of solumedrol intravenously by a nurse who came to my home. The procedure lasted approximately one hour each day. I then took oral doses of prednisone for 12 days to taper off of the medication. As predicted I had a horrible outbreak of shingles in January. I am currently seeing an infectious disease specialist to try and lessen the number of outbreaks I have. I have begun to feel better and I am now able to drive a car again. It's wonderful to have my freedom back!!!!!!!
Unfortunately during a routine mammogram another lump has been found. I have been referred to a surgeon.
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UPDATED: April, 2003.......I was lucky once again. The lump was benign. I am to have mammograms every 6 months for a while.
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UPDATED: July, 2003.......Although I am slowly becoming stronger I am not making as much progress physically as I had hoped I would. There are times when I am able to drive a car for short distances but, the pain and exacerbations from the M.S. have left the right side of my body very weak.
I am having flashbacks again. Some began last month after Father's Day. This is not unusual. Although I try to think of Father's Day as a day to celebrate my husband and son-in-law it is impossible of me not to remember my own father and what he did to me. So....the falshbacks have begun and at some time the nightmares will return. I know this from past experiences and I know that I will get through it with the help of my husband, family and friends.
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UPDATED: October 7, 2003.......My blood pressure is very low. I saw my doctor and she is sending me to a cardiologist for evaluation and testing.
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UPDATED: October 22, 2003.......I have seen the cardiologist. After looking at my EKG, blood work, carotid artery ultrasound and my echo-cardiogram he feels that my low blood pressure is not related to a heart problem. The good news is that he feels my heart is fine. The bad news is that after reviewing all of my medical records he thinks I have Addison's Disease....which is potentially life threatening. I had an adrenal gland removed in October, 1987 due to a tumor. My remaining adrenal gland has been compensating for all these years but apparently it can no longer do the job. I am being referred to an endocrinologist to have all of the necessary tests done. It may take several months before I am able to get an appointment.
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UPDATED: April 3, 2004.......My adrenal gland is functioning well and is still able to compensate for the loss of the other one. The problems I was having were caused by medication I was on. Shortly after discontinuing the medication my blood pressure returned to normal. Unfortunately in November, 2003 I had a severe m.s. exacerbation which did a great deal of damage to my central nervous system. I have gone through physical and occupational therapy and I am able to walk a bit around the house but must use a wheelchair when we go anywhere. My arms and legs are very weak and I am trying to find ways to fill my days. My husband has been wonderful...there are times when he is a full-time caregiver. I know that eventually I will find something new that will once again enhance my life and give me a new opportunity to learn something. I must be patient.
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UPDATED: March 14, 2005.......I've begun to play with Paint Shop Pro. It's much more enjoyable than the occupational therapy exercises I do each day. My last severe exacerbation caused me to become dyslexic. So, while I'm using my hands with Paint Shop Pro I'm also learning to read and comprehend what I have read each time I do a new tutorial.
I still use a wheelchair most of the time. However, my hands are "strong" enough now for me to use a power chair. This has allowed me a bit more independence. I still find driving very painful so I rely on my husband to take me places. I miss the independence of leaving the house by myself. But, I'm not going to submit myself to more pain simply because I'm stubborn and have difficulty being dependent on someone else....even my husband.
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UPDATED: May 1, 2005......There is a small lump on my right breast. I will have a biopsy done next week. I've been through this before and have been very fortunate....the lumps have been benign. My concern is that the biopsy may trigger a mild m.s. exacerbation.
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UPDATED: May 22, 2005......I had a "core biopsy" done. There were no signs of malignancy. It did trigger a mild exacerbation but I recovered quickly from it. I'm still recovering from the biopsy. My surgeon would like to have me undergo another ultrasound in six months to see if there has been any change in the mass.
I have an appointment with my neurologist next week. There has been a great deal of discussion concerning releasing Tysabri within the next 5 or 6 months but with very stringent restrictions.
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This ForeverTears - For All Abused and Neglected Children Of the World site owned by shayna
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INTRODUCTION